Help Brother Move for His Kidney Transplant
Donation protected
Help My Brother Make It To Kidney Transplant
My name is Lalaysah Rose (19) ,
and this adorable (sometimes lol), hilarious and too smart for his own good kid, with a gigantic heart right here… is my 11 year old brother, Jaylon.
This is my mom, Lynette Rose.
For over two years we have been making plans with our tribe (Kel and Carrie) to move to Colorado to get away from the pollution so my brother (due to asthma) can enjoy life outside again. Our Doctor backed this 100%. Kel and Carrie moved there this past July, and I left to go live with them in August. Mom had to wait till her lease was up, at the end February. In two weeks from now. Then we had an unexpected turn of events. Mom needs help. I just need my family with me…and my little brother needs a kidney transplant.
When Covid hit, we had no clue that mom and Jaylon wouldn’t be able to come out of quarantine with everyone else. June 7, 2020 everything was fine. That evening Jaylon started vomiting. His heart rate went up, and he couldn’t hold himself up or walk. It escalated quickly. Kel helped mom carry him to the car and drove them to Primary Children's Emergency Department. The doctors hooked him up to an IV and wanted to keep him for 2 nights to monitor him. They never found an answer as to why, but he developed metabolic acidosis, or why his organs were moments away from shutting down. This happened in less than a 24 hour period.
January 1, 2021, mom had a cervical biopsy. While on the table during her procedure, she got the call that her mother was in the ICU with covid. Then 3 days later, Mom got 2 calls. Mom needed a hysterectomy to prevent cervical cancer from fully developing. Then Grandpa called, she only had 30 seconds to speak to Grandma before they intubated her. Grandma wasn't able to respond. Seconds later they intubated her. Hours later she passed away.
April 19, 2021, mom went in for her hysterectomy. She woke up and instantly felt pain in her right eye. She said she opened her eyes, then put her hands up to her face, informing the nurses, as it was the 1st thing she spoke of. She asked them to chart it multiple times, it never was. 10 days later, sitting on the couch recovering, it felt like she was punched in the eye yet no bruising. The doctors admitted had she had bruising, they'd have inquired if she was a victim of domestic abuse. Retina ultrasound was clear. Another ED visit with no answers. Now we had 2 medical mysteries to monitor.
From April 2021 to August 2023, mom fought for a diagnosis. Daily head pain on the right side of her head that triggered a migraine every 2 to 3 days. Light and sound hurt. Vision complications, unilateral proptosis, making her scared to drive. She has had a difficult time with thought process, her words getting tied up, weakness and her overall functioning declined. Drastically.
She had a few drs who treated her like she was just trying to seek medication. Mom was just desperate.
Emotions have become confusing, short term memory is barely there. Our doctor finally realized how much mom was going through after mom decided to stop masking her pain, and let Dr Jo see how crazy and emotional it REALLY made her. Dr Jo's face, mom said, was of extreme shock and concern. Mom could tell she was contemplating just HOW serious she needed to treat this. Mom asked if SHE was ok lol. They laugh about it now.
An MRI is still needed to rule out a stroke during surgery, as well as testing for cervical neuralgia. Also, mom has had 5 teeth pulled, starting not long after the head pain. Her teeth are just breaking consistently, and a couple weeks ago, x-rays showed every tooth is compromised. Her dental pain is only making the head pain worse. Insurance only covers extractions.
June 10, 2022 Jaylong started getting lethargic and vomiting. He had to be carried to the car, he started losing control of his body functions. They rushed him back with 5 nurses tending to him, not even waiting for mom. She had to run behind them to catch up. It was what we all had been fearing most. Covid. Jaylon had the Omicron variant. They kept him for 3 days this time. The doctor told mom before she left, that quarantine had absolutely saved him, being any stronger variant would have won. He would not have survived it.
His next admission was April 1-5, 2023. It started just like the other times. Vomiting all of a sudden. Kel and Carrie's dog, Charlie would not leave Jaylons side. That scared mom even more. Kel again, had to carry him to the car for the 3rd time to rush them to the ED.
On the way there, he again lost control of body functions. Mom had to chase behind the nurses again. The ED has come to know Jaylon well, as they do all patients who have no answers. For the 3rd time, mom had to watch needle after needle after needle used on my brother.
They called in 3 teams for testing. Nephrology, Metabolic and Oncology. The 1st round of genetic testing didn’t find anything, our only discovery was his kidneys had shrunk, and like before, his organs were close to shutting down.
This time was when mom got the news, he will need a kidney transplant. We don’t know when. It could be when he’s in his late teens, or next week if his organs fail due to acidosis.
Concerning moms diagnosis, it turned out to be Hemicrania Continua, comparable to trigeminal nerve pain. A 24/7 constant headache that doesn't end and can trigger migraines. Medication has helped. She says life is tolerable now. She still struggles with symptoms and is on over 8 medications.
As far as the move, Mom started early enough with planning their move so that things should have gone as expected. It didn’t. Her friend who had offered to fund her moving costs and deposit for an apartment sent a text in January and said they were no longer willing to help, reason unclear. Now, it’s too late to find assistance and she has 2 weeks (Feb 29) to find the means to get there and get established. Or else she will be homeless with my brother who has to be in a safe setting. Just 3 days later her car battery died and her brakes went out. She missed a crucial dr appointment, with no longer having a support system in SLC. She’s struggling with “what's next” because of her difficulty with processing, well, everything. She’s mentioned multiple times to her caseworkers she needs help, her request has been consistently ignored. It's vital to have Kel and Carrie, especially since Kel is also a nurse and has been crucial to watching Jaylon at home. Also, their hugs are crucial, no one gives them like Kel. We need all the hugs.
Please, help me have my family with me.... and mom, she can’t do this alone. She needs to leave SLC for Jaylons well-being. She needs us. Jaylon needs us. I need them. I am trying to manifest her way here, and I’d love and appreciate all those willing to make that happen.
I honestly am not sure how much is needed. I've never done this before. So I estimated the bare minimum to the best of my ability.
From all of us,
we thank you, we appreciate you, we wish you the best,
Lalaysah Rose, Lynette Rose & especially, Jaylon
$TsunamiRoze69
Organizer and beneficiary
Lynette Washington
Organizer
Clifton, CO
Kelcey Grinder
Beneficiary